Spina Bifida: The Journey

The Emotional Story of Raising a Child With Spina Bifida

When some people have something on their minds, they usually take a time out or go for a long walk, read a book, or just have a good old venting party. For four years, my BFF was my Bic pen. I took my pen and grabbed a notebook and wrote pages after pages. My notebook contained 114 pages of my journey raising a child with spina bifida and hydrocephalus. I was on a writing marathon and I didn’t want to stop.

My diary was filled with dates, specific places, times and people. I didn’t want to forget a thing. I would find myself writing at nights when the entire house was sound asleep. It was the best time to connect with my thoughts knowing that I wouldn’t have any interruptions whatsoever. If I didn’t discipline myself properly, I would have written until the sun came up.

Each page was filled with thoughts about my daughter, Gabrielle. The first page starts with the first contraction and ends when Gabby going to school at 4 years old. I started writing as a way of releasing my feelings since we found out about Gabrielle’s diagnosis. Many times it was very emotional to write because I had to relive Gabrielle’s doctor’s appointments or the at home therapy sessions. So I wrote and never stopped writing.

Some experts would say that maintaining a journal is often therapeutic and can offer a pathway toward understanding ourselves in an intimate way. So I asked the question, what did I learn about myself? I can honestly say that I became addicted to writing out every thought and  emotion through our journey. I would find myself opening up the diary and rereading things that I wrote in the past. I believe that through this act of literally reading my own mind, I was able to perceive experiences more clearly and thus feel a relief of tension.

There’s a scene from the movie Forrest Gump where Forrest was sitting on his front porch after Jenny had up and left him. Forrest sat in deep thought, and out of nowhere he got up and ran. And he ran for a long time. That’s how I felt after Gabrielle was born, I did by own kind of running. I had to write it all out so that one day someone might understand what I was going through. That’s my hope.

In June of this year, I published my diary as a book to help raise funds for the Spina Bifida and Hydrocephalus Association of Ontario. Every chapter in this book exposes my heartfelt feelings and my harsh realities. This is an open book on my life with Gabrielle. It’s a true-life story about Gabrielle and my own battles and triumphs experienced in dealing with the situation as a mother. With this book, I’m trying to reach someone who is just like me: scared, doubtful, sad but striving hard to believe.

I have learned to accept what I cannot control and to focus instead on the gift given to me from the start of that incredible journey. That gift was one of hope for a better tomorrow, the hope that resides in the heart of a child.

Sharon Ennis is a mother of 4 children. She is the author of Gabby’s Gift—Hope in the Heart of a Child. Visit www.GenesisOnePublishing.com to get your ebook or hard copy today!

Sharon enjoys reading, working out and having fun with her children.